Saturday, July 11, 2009

Just a quick update. Xian's continuing to do well on her current medications, although her last blood work showed that she had a low neutrophil count. This is a sign of battling an infection and not unusual for Lyme patients, but means we need to be a bit more careful about avoiding exposure to viruses. The frustrating part is that no one from the pediatrician's office notified me about this -- it was the child psychiatrist who mentioned it and was concerned! She's now provided the blood requisitions. She has contacted the Lyme specialist in BC, Dr. Murakami, and seems more confident about being the treating doctor...and it sounds like she's tracking things more carefully than anyone has locally so far. She wants to see Xian having the blood tests every 2 to 4 weeks depending on the results of the one she has on Monday.

So, thankfully, we don't have to travel to Seattle this summer, and I am hoping that Xian may finish treatment without having to return to the US. We've been trying to get requisitions to have tick borne illness testing in Canada, for the coinfection tests that are available and something called the C6 peptide, which can show Lyme infections that originate from many different areas of the world...something that has been a bit of a question for Xian, given how sick she got after her probable exposure in 2007. I've recently seen a risk map for Asia, and both the area where she lived until adoption at 15.5 months, and the area we travelled to for Rachel's adoption early in 2007 are known to be high risk areas for Lyme and other tick borne illnesses. One of the theories I've heard is that the sickest Lyme patients may have had multiple exposures -- earlier infection may be kept in check by the immune system, but a later exposure pushes things over the edge. So, the C6 seems a fairly important test.

The pediatrician has said she can issue the coinfection tests that were recommended, but it has now been a month and no one at the Provincial Lab seems to be able to find out how to order the C6, although I am aware that the National Lab in Winnipeg will issue it...and even with multiple phone calls to inquire, nothing seems to be happening. I have to really wonder about this and the lack of any communication about it. Makes me believe that no one really wants us to find evidence that Xian has Lyme, since then they might actually be responsible for how sick she got when untreated. Hard not to be cynical...

However, I've recently found out that the California lab (IgeneX) where I am getting her tested again (this was the lab where she was tested just before her US diagnosis--so we have a baseline to compare to for those tests) also does the C6, and apparently sends the blood to the same lab in Boston that does the Canadian tests, so will just pay for it and get it done that way. (I've also heard some stories about Canadian Lyme patients who did get the C6 issued then having problems with the blood not being shipped in a timely manner, which affects the accuracy of the results.) They shouldn't be able to argue about the validity of the results if it's the same lab doing it. I also requested the "many Lyme tests" that the infectious diseases doctors told the psychiatrist were done, but funny thing, so one has yet passed anything along....so I will be requesting Xian's full medical file and it will be interesting to see if there is anything there. While Xian was in hospital I did get test summaries and there wasn't anything passed on to me then. I've figured it's time to pull her full medical file, including the two weeks in child psychiatry -- just to see what they flag and don't pass along or 'lose'.

It has been recommended that Xian go off of all antibiotics for three weeks before testing, if she can manage that, so we will give it a try (and thus the urgency to get the requisitions soon -- don't want to be doing this at the start of grade one!). I've been told that a short medication break can also provide helpful information in regards to her current bacterial load and how much longer we may be looking at treatment. The three week break means that the forms of the Lyme bacteria that tend to go into 'hiding' in different forms deeper in the body will be more likely to convert back to the spirochete form, and, theoretically at least, more likely to show up in her blood. Hopefully the tests will provide some useful information.

Xian is continuing to make steady improvements in her memory and speech and in things like counting, writing etc., although she also has some fluctuations. One day she can write her name properly and the next she'll have it reversed or scrambled, though over all she's having more of the better days. She's been watching Nihao Kai-Lan -- a cartoon which teaches/uses some Chinese -- and interestingly she seems to recall numbers in Chinese better than she does in English...perhaps there are links to her 'old' knowledge of Chinese, in a different brain area, as even when she was very sick, she seemed to recall more Chinese vocabulary than I would have expected. She's also started having some memories return from when she was very sick -- which is an improvement, but a bit of a sad one since the memories tend not to be very good ones, or they are confusing images for her. She was asking the other day about sleeping on the leather couch -- last summer when it was hot and she had severe insomnia and was battling lots of bacterial die off with lots of strange brain symptoms we all camped out downstairs, with Xian on the leather couch because she was still going through severe night sweats, and too wild to sleep with Rachel on a little mattress or with me on the bigger couch. She also remembers Rachel and I being sad when she was sick and seems to be working hard to make sense of things, but has a pretty accurate version of events from what she's mentioned so far. A mother of a boy who had a similar case of neurolyme told me a while ago that she believed her son was more 'locked in' than unaware and that he had recounted things that had been taught in school lessons when he had been unable to communicate and severely ill. It does seem more and more that Xian was in the same state -- unable to communicate or control her actions, but seemingly more aware of surrounding events than anyone has expected.

Xian and Rachel have been in daycare for the summer and Xian seems to be calmer and happier than she has been all year -- and also back into the normal ups and downs of her friendships there, and also now able to report the finer details of what goes on during her day. They have a good and busy summer program with lots of young new and energetic temporary summer staff. People who have seen Xian recently, especially those who haven't seen her in a few months, all remark on how good she looks. It's really only when you look very carefully at particular areas when you notice how she is still affected, and those things are still showing improvements. With language, she has much better 'word finding' ability now and is not so frustrated. The main language issue is that her grammar is still a bit 'off' -- with things like word tenses or some word order issues a bit out of kilter still. She has been enjoying a lot of physical play -- doing yoga moves, imitating gymnastic moves she's seen older girls doing etc. She is very flexible and strong and quite proud that she can do things that other kids have a harder time with. Who knows she may be ready for a few classes in the fall, if we can find the right class.

I still find it hard to believe all that has happened to her (and us) in the past two years....it still seems like some weird dream, especially when I keep running into strange struggles with the medical system, though thank goodness we've now got at least one person on Xian's side, and from what I have heard, her story is being talked about in the local medical community. Surely some doctors will have to wonder about her 'miraculous recovery' with treatment for Lyme disease when she was basically written off as an incurable case, not worth any further investigation.